Dr. Joann N. Bodurtha is a Professor of Pediatrics and Oncology at the Johns Hopkins University School of Medicine and a medical geneticist in the McKusick-Nathans Institute of Genetic Medicine. She is also a Professor in the Department of Health, Behavior, and Society in the Bloomberg School of Public Health. Prior to 2011, she had been at Virginia Commonwealth University for 28 years where she was a Professor of Human and Molecular Genetics with joint faculty appointments in the Departments of Pediatrics, Obstetrics-Gynecology, and Epidemiology and Community Health. She graduated from Swarthmore College with a biology degree in 1974 and later served on the Swarthmore College Board of Managers from 1980-1984. She received a Luce Foundation scholarship and studied at the Nagasaki University School of Medicine with Dr. Masahiko Koike in 1976-1977. She received her MD and MPH with Honors from Yale University in 1979 and completed a pediatrics residency at Children’s Hospital of Philadelphia in 1982. She worked as a USPHS physician on the Turtle Mountain Chippewa Reservation in North Dakota with her husband Dr. Tom Smith from 1982-84. She completed a medical genetics fellowship in VCU’s Department of Human Genetics in 1984 and is board-certified in pediatrics and medical genetics. She continues to see genetic patients of all ages in the Harriet Lane clinic and is an in-hospital pediatric attending in the Bloomberg Children’s Center at Johns Hopkins.
Dr. Bodurtha led the formation of the Masters in Genetic Counseling program at VCU in 1990 and the VaLEND (Leadership Education in Neurodevelopmental Disabilities) program in 1995. Over 200 trainees have completed these programs. She served on the American Academy of Pediatrics Committee on Native American Child Health for ten years, and was recognized as the team leader for a number of awards, including Richmond YMCA Woman of the Year in Science and Medicine in 1997, the first recipient of the VCU School of Medicine’s now annual Innovation in Teaching award in 1999, the Virginia Breast Cancer Foundation Professional Achievement award, a State Council of Higher Education Outstanding Teacher for Virginia in 2006, the Genetic Alliance’s Art of Listening Award in 2008, and the Association of University Centers on Disabilities Professional Achievement Award in 2009. She served as President of the WISDM (Women in Science, Dentistry, and Medicine) organization at VCU from 2000-2003. She was director of the VaLEND program for seventeen years, co-director of the BIRCWH (Building Interdisciplinary Research Careers in Women’s Health) program for seven years, chair of the Statewide Genetics Advisory Committee for 10 years, and vice chair of the Chickahominy Health Advisory Board.
She has written over one hundred scientific articles, book chapters, and reviews and has received funding from NIH, the CDC, the Komen Foundation, the March of Dimes, the Maternal Child Health Bureau of the Department of Health and Human Services, the Urban Health Institute, and other organizations. Her research is focused on communication in cancer risk across the lifespan, understanding barriers to care for children and families with genetic conditions and improvement in understanding of genetic conditions. She has most recently focused on issues of family history and DNA banking in palliative care, and international issues in end-of-life communication in pediatrics with presentations in Libya, Turkey, and Oman.
She is currently co-director of NYMAC, the regional newborn screening and genetics collaborative, a member of the Genetics in Primary Care Collaborative of the American Academy of Pediatrics, and director of the biomedical strands in the Genes to Society curriculum of the Johns Hopkins School of Medicine. Dr. Bodurtha has worked throughout her career to enhance access to genetic care across diverse populations through consumer engagement, workforce development and education, clinical care organization, direct service, and public health research.
Pediatric Palliative Care – Family-Centered and Ethical Concerns
Abstract
Background: Life-limiting illnesses in childhood confront children and families with the unnatural fact of a much foreshortened lifespan. The death of a child impacts a family for a lifetime. Providers and caregivers work to ease suffering and enhance quality of life, as decision-making is improved with collaborative and professional communication. The evolving model for pediatric palliative care includes family-centered, comprehensive (including bereavement, social support, and spirituality), early and integrative care. Symptom relief, comfort, and communication (spoken and unspoken) are critical elements in the care of the 20% of children who will die with cancer. The family is the unit of care irrespective of the location of care.
Methods: Quantitative empirical studies in pediatric palliative care are developing with attention to ethical frameworks. Symptom relief and communication strategies are being assessed. The Five Wishes ® document has been examined in adolescents, as have the meaning of being a good parent, sibling and professional caregiver needs. In the United States, the Hasting Center has provided new guidelines that address the concerns of conscience in providing end of life care, especially the challenges of saving a life without sufficient regard for the profound consequences of our interventions on a child’s subsequent quality of life.
Results: Some of the goals of palliative care for the child and family include: defining goals of care, allowing the child and family to make informed choices, reassuring the child and family of love and meaning, and helping prepare for death. Multiple transitions occur across the disease trajectory and are often associated with uncertainty, hope with “healthy denial” and asynchronous effects within a family. Children continue to develop physically, behaviorally and in their social roles. The literature generally supports involving children as much as possible in decision-making in a developmentally appropriate manner as trust in health professionals is based on clear and honest communication and documentation. Assent is advocated for children who can participate in decision-making and having their preferences heard.
Conclusions: Cicely Saunders first advocated in writing for palliative intentionality in the management of fatal illness in childhood in 1969. Pediatric palliative care is centered in a deep appreciation of the child’s suffering and living with a life-limiting illness. It can be conceptualized as being part of the care paradigm throughout the course of the illness. Disease-directed therapies are provided concurrently with quality-of-life measures as enrollment in hospice and/or palliative care may be for longer duration in children. Culture fundamentally shapes how patients and families make meaning out of illness, diagnosis, suffering, and dying. Multiple resources are available to support children, families, and providers through this journey.
